On January 3, 2016, after having tapered over the course of two years under medical supervision, a benzodiazepine nearly killed me. I was standing in the kitchen cutting carrots when I suddenly had the strongest urge to stab myself. Nothing like this had ever happened to me before, but I had been dealing with ever-increasing and worsening symptoms of post-traumatic stress “disorder” since starting the taper. I dropped the knife, called my sister to watch my dog, and drove myself to the hospital. Their response was to cold turkey me off the drug. I thought the suicidal ideation was coming from me, not a side effect of the drug. So did my doctor.
Four days later I was released from the hospital, and on day five I began experiencing the most horrific form of suffering, one that I didn’t even know existed. My acute withdrawal lasted nearly six months and I had a form of inner akathisia where I experienced non-stop suicidal thoughts and urges, agitation, and a feeling of pure adrenaline. When I think back to what kept me alive, I still do not know.
The following piece was an attempt to reconcile why some of us in psychiatric drug tolerance and/or withdrawal stay and some leave. I am still trying to reconcile what these chemicals are capable of, how the urge can morph into an action, how we maybe just don’t understand suicide all that well. For me, the suffering was so intense it was too painful to stay alive. I understand how my friends felt in their last moments. You will read their story below. It could have just as likely been me. I’m surprised it wasn’t.
I am 18 months away from that moment and still trying to make sense of the last 14 years of my life in a mental health care system where I took all drugs as prescribed, followed all their opinions and tried all their therapies. My health only got worse, not better. As I still suffer from protracted symptoms, I am rethinking what it means to be truly mentally healthy as I pursue a master’s degree in social work. As we approach World Benzodiazepine Awareness Day, July 11, 2017, we must think of those we lost and be a beacon of hope for those who are in the darkness that is psychiatric drug withdrawal.
Some full names are used with permission from the families, other names and places have been changed to protect the dead.
If you are a person who is sensitive and/or still in withdrawal, please do not read further without support.
* * * * *
“There is an optical illusion about every person we meet.” ~ Ralph Waldo Emerson
When I heard the news I nearly collapsed in my bathroom. I felt his presence. It was more real than me writing these words to you. He told me, “Tell her it was an accident. I am so so so so sorry. Tell her it was an accident.” Those words repeated themselves to me for four days until his wife called me to make sure I was okay.
It was a Tuesday. Tim Hunt kissed his wife on the cheek and said for her not to forget to wake him up first thing for his doctor’s appointment. “Don’t forget!” he shook his finger right before he closed the bedroom door. Twenty minutes later, his wife, who was sleeping on the couch, awoke to a single gunshot. I never asked her where the bullet pierced him. I wanted to remember him the way I last saw him. Army crew cut, big biceps, and shiny white teeth with a smile that was contagious to anyone who spoke to him.
Hindsight is 20/20. There were no signs because the only sign that anyone needed to see was that he was on Ambien. A known side effect of Ambien is that people eat in their sleep, drive cars, get in wrecks, and wake up in jail not knowing how they got there. Although Ambien is a z-drug, it acts similar to a benzo and can harm inhibition. Would it be so hard to believe that the medication took away his inhibition?
Josh was part of our online support group for many months after learning that a slow taper was the method he should try instead of cold turkeying Valium. He tapered for over a year before he “jumped off” a tiny dose of Valium, probably less than 0.05mg. There is no such thing as a small dose when your brain chemistry is affected. After jumping, he experienced severe respiratory distress. He felt like there was a plastic bag over his head while trying to breathe through a straw. I imagine his chest felt like it was padlocked and caving in on itself. No matter how deep and slow he breathed, his body didn’t feel satisfied from his last breath. Josh couldn’t leave his couch and had to move in with his parents at 43 years old.
Josh had short brown hair, glasses. His Facebook profile picture was of him sitting on the bank of a shallow river. You could see the browns and oranges of river rock, tiny ripples of white as the water ran over them. Josh was smiling, as if about to skip a rock. Hiking boots and Columbia shorts, a well-worn blue t-shirt. On August 17, 2016, Josh shot himself. I never asked where the bullet landed. Members of the online support groups wrote public posts about how benzodiazepines had killed him, how the pharmaceutical industry had murdered him, and how suicide is not always a selfish act.
Ever wonder what happened to Eminem? Why he disappeared for a few years? Xanax withdrawal. How about Johnathon Davis from KORN? Same thing. Twenty years ago it was Stevie Nicks and Klonipin. She was quoted as saying that withdrawal from Klonipin was worse than her cocaine addiction and it took her three years to heal from it.
Stephanie Eisensmith lived in Bradenton, Florida. She was the mother of two grown children and was a licensed practical nurse until she had to stop working due to the side effects of being prescribed Klonipin for 10 years. Her hair was dishwater blonde, layered and feathered back like one of the Charlie’s Angels. She put herself in detox last December, thinking they would take her off the medicine and she would get better. She was cold turkey’d from 3mg of Klonipin in that detox facility by a doctor.
Ten months later, she was still suffering from akathisia, a rare movement disorder caused by psychiatric drugs. On July 11, 2016 her husband filmed her non-stop moving so she could bring awareness to the effects of psychiatric drug withdrawal for the inaugural World Benzodiazepine Awareness Day. She marched in place like a nutcracker and her fingers rubbed themselves together on her palms as if she were warming nickels in her hands. In the video, she says, “This is what Klonipin withdrawal does to you. This is akathisia. I can’t stop moving. I can’t sleep.” Her movements get faster. Her fingers rub against each other faster, her t-shirt flaps near her jeans. She says, “Okay, you can stop it now,” and you can hear her voice chop into tears as the film cuts off.
On September 23rd, Stephanie messaged me: “Angie, can you talk?” We went back and forth and I told her, “Stephanie, you’re going to make it.” She said, “No, I’m fucking not.” Less than a month later, Stephanie jumped off the Sunshine Skyway Bridge. Her hair moved fast as her breath was taken and she surrendered her suffering to gravity. It is said that when a body hits the blue water, there under the Sunshine Skyway Bridge, the dolphins circle the body to protect it from being eaten by sharks.
You wouldn’t know by looking at us. We look normal. We sound normal. We act normal. We came off drugs like these. Yeah, a stigma. Taboo. Don’t talk about it, or they will call the authorities and have you locked into a white padded room wearing only a hospital gown, no shoelaces. You wouldn’t know that we are the ex-mental patients, no longer believing the lie that we are broken and needing pills to fix it. Prozac deficient, Ativan malabsorption. Round holes in our cells that only need their drugs. You wouldn’t know that psychiatric medications are more dangerous than say heroin, crack, cocaine — any of them, really. You wouldn’t know that Ativan did this to us. Xanax. Valium. Klonipin. Tiny crumbly pills that we took as (or less than) prescribed.
The Macklemore song plays in the background — “my drug dealer was a doctor” — but we aren’t even addicts. Every day for years we twisted that lid back on… clack clack clack. You wouldn’t know how long we endured these intense withdrawal symptoms that made us want to run screaming to our neighbors. You wouldn’t know that if we were to do that, they would put our delicate and damaged brains on more meds. Gasoline on a fire. Too many cells left naked after the drug was removed from the system. The biology, the physiology, and the psychopharmacology, they are all abnormal in us. You wouldn’t have a frame of reference to relate to this. None.
But please try to understand that we are suffering, that there is a meaning to our words, that although we cannot quite touch our lives, we remember the way that hair falls during a crew cut, the way the white water washes over the green and brown rocks, and the color blue as it reflects the invisible force that keeps us alive.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
I’m still curious about the use of niacinamide in tapering; however, not so interested that I want to get addicted to benzos to try this on myself. Anyone come across any data? Remember, niacinamide, a form of B3.
Horrific! Benzodiazepines maim people, exterminate them, and condemn them to gruesome deaths. Getting off those narcotics (with NO clinical support, of course) was the most grueling and torturous experience of my life. The world’s deadliest weapons are behind the counter at your local pharmacy. God help you.
What that S did to me and to this day with family or anyone back over 1000 miles away in the land of my old life the alcohol still gets the blame. I am still not ready to type into this website much of what happened but I took drastic destructive action to try and end the nightmare. I will just describe it as property damage no people or animals got hurt. I wrote try and end the nightmare but actually it worked. It changed everything, I knew my death was next, that time line had to be changed. Sorry for the vagueness that might just have people imagining something worse then what went down, a desperate act. “ssri stories” I was listening to this song and got inspired https://www.youtube.com/watch?v=Cov9nmNmXsg
“It is said that when a body hits the blue water, there under the Sunshine Skyway Bridge, the dolphins circle the body to protect it from being eaten by sharks.”
I was in that very spot July 4th about 11:30 PM alone in a small speed boat I went under the Sky Way going home after a party on the beach, been boating at night for decades most of it up north but I got spooked worse then in a long time being in unfamiliar waters black as ink, do I go to the left or the right of that green blinky thing ? Keep the Greens between me and the Gulf now where is the next one ? Thinking about those sharks, stingrays and sandbars with the razor sharp oyster-beds. OK motor now would not be a good time to act up, volts good and water pump stream looks good next pole green triangle stay sharp . I run a tight ship I am here typing and been to hell and back in this life I guess God looks out for me.
I was a little busy to give thought to the darker side of the Sky Way Bridge. I planned on doing a few bottle rockets by that bridge and listening to the cool echos from the reports bouncing off all that concrete but miles to go and that channel is not so easy to locate at night, that problem took priority. I admit it I was scared.
What I am giving thought to now is what I have said it before but I think its time for me to move on from this payback the psychiatric industry thing I do online. I raised alot of awareness, just one topic I made that I won’t name cause I don’t want people messing with it draws thousands of people to this website. I look for stuff online to post and find stuff I posted, I did alot.
I survived a decade in that horror of psych med hell, that indescribable horror that goes with the worst of it but I should “let it go” I hate that saying but I should. I am back I am me again with July 4th – boats – fireworks – booze… Back on the the sea the place I always loved even in the middle of the night on a small boat in a scary predicament.
“we must think of those we lost and be a beacon of hope for those who are in the darkness that is psychiatric drug withdrawal”
Well you can make it back from that darkness, I did. I don’t know what to write exactly that kind of messed me up that Skyway thing with the sharks and Dolphins I was just in that spot.
That beacon of hope, the green blinky thing the channel markers, in your journey through the darkness that is psychiatric drug withdrawal your channel markers are in your memory of what you were like before the psychiatric drug nightmare, going off course is thinking that state of withdrawal is a permanent condition.
I remember the clinicians with me using that word “exposure” to basically describe exposure to all that psychiatric poison in 2007 then Zyprexa and another round of high dose Benzo dependency to come off that that was even worse. I was Exposed to alot and Remeron a decade of ADHD drugs…and I am OK, you can be OK again. I am proof of that.
I know that space, that thinking in the hell of it “I will never feel OK again” its not true.
Thank you for your hope cat and I am glad you are still here too to be a beacon of hope to others.
Meanwhile if the benzo hell ride takes you down the path to drug and alcohol rehab like it does many of us that path leads to AA and 12 step. I won’t bash AA, its actually a wonderful place cause most of the people know what hell is and have been though it but I will bash that unofficial rule that says don’t bash psychiatry .
That is correct I am not a doctor, gee thanks capt F-ing obvious as if the room believed I was a Dr but my story is my story and I am not sugar coating it for anyone.
I went from the frying pan of not being able to sleep without a drink to the raging inferno of Xanax Clonopin Remeron and then “ADHD” and Dexadrine and then Zyprexa ,,, a decade of indescribable hell ruined so much as a direct result of these “doctors”.
I should be quite psychiatry becuase is an “outside issue” ? F off , I will not.
“I should be quite psychiatry becuase is an “outside issue” ? F off , I will not.” Truer words never spoken, neither will I.
DEADLY MEDICINE AND ORGANISED CRIME.
DOCTOR SURGERY RESPONSE TO ME
June 5, 2017:-
Dear Mr ….
Firstly may I apologize for the delay in our response to you. I have reviewed our prior correspondence and our prior consultations with our legal advisors.
We have been advised that we are not allowed to remove prior correspondence from the records as we would be considered negligent if we were to do that. As a practice I hope you can understand that we have followed the legal advice that we have been provided with.
However I do note there are no mental health ‘problems’ within your notes I would also point out that if you have letters from other medical sources indicating that our records were considered malpractice we would want it to be added to the medical records so that the situation is explained clearly.
I am aware that we have been discussing this matter for many years and I would like to make it clear that …. medical is not able to change this position due to the aforesaid legal advice. While we would like to continue to have you on our patients list if you find their position on acceptable you are within your rights to find another surgery that may be willing to do this.
ME TO DOCTOR SURGERY
April 27 2017
Please examine the email and attachments (below).
I am keen to challenge the 1986 Irish Record Summary and any Mental Health Diagnosis you might hold on me.
Please record the exact location of the attachments to this email trail on your information system, so that I can refer to them at a later date.
(Resent Emails dated 29 August 2013 + 16 October 2014 – also contain more background information).
I would ask for the Amendment of the 1986 Irish Record Summary (not Removal).
Please acknowledge receipt of this email trail + attachments.
Please find attached:-
1. The Relevant Sections of my November 8, 1986 Handwritten Adverse Drug Reaction Warning Request Letter (3 pages).
2. The November 24, 1986 Irish Record Summary (2 pages) – With Requested Adverse Drug Reaction Warning Intentionally Omitted.
3. My January 13, 2012 ‘Near Fatal Modecate Experience’ – ‘Statement’, sent to;- G….. University, Depot Side Effect Research & Monitoring Team
4. Admitting Doctor, Dr F…. description of me ‘on presentation’ at G…. in November 1980.
5. The November 1986 False Reassurance Letter From Dr D….
MALPRACTICE AT G….1986
Please examine and reconcile the attachments to this email and please read through the background information to the offending drugs for perspective. My recovery after April 1984 was as a result of discontinuing these drugs.
MALPRACTICE & DIAGNOSIS
I don’t think a Medical environment engaging in Malpractice can be trusted to represent a Medical Opinion.
BACKGROUND INFORMATION ON THE OFFENDING DRUG
Associated with Akathisia and depot Fluphenazine (Modecate) treatment
https://www.researchgate.net/publication/16313058_Suicide_Associated_with_Akathisia_and_Depot_Fluphenazine_Treatment 1983 (Dr K Shearer, Dr A Frances..)
Dr A Frances went on to become Committee Chairperson to DSM 4.
I think I describe the symptoms of Akathisia fairly well in my November 1986 Handwritten ADR Request Letter + in My January 2012 ‘Statement’ to G.. University.
Wikipedia:- ‘Signs and Symptoms’
“….Neuro-psychologist Dr. Dennis Staker had drug-induced akathisia for two days. His description of his experience was this: “It was the worst feeling I have ever had in my entire life…”….”
Adverse Drug Reaction
“…The side effects most frequently reported with phenothiazine compounds are extrapyramidal symptoms including pseudoparkinsonism, dystonia, dyskinesia, akathisia….”
Sent from Yahoo Mail on Android
RESEARCH PARTNERS:- €9.6M
horrifying. I’m so sorry. I, too, would like a lot of things removed from my records. To include a spot where the doctor wrote basically that I was delusional thinking that benzos caused my symptoms into the 2nd month of cold turkey.
Thanks Angela – It really is “Deadly Medicine and Organised Crime”.
These stories are incredibly sad and in some ways mirror how the drugs often made me feel. I’ve tried to warn others. I don’t know how better to do that than to be a shining example of recovery after ditching the drugs. I get told so often “you are a totally different person and doing so amazing”, I’ve been called “unrecognizable” from just a few years ago, and then they tell me what new psych med they’re on or offer me some of their xanax. One woman I know recently started a sentence with “all the researchers and psychiatrists agree that…” I’m at a loss as to how to get through to these dear friends how dangerous these drugs are. I’m afraid most of the people I am in close contact with worship at the alter of science and medicine and see me as some sort of statistical outlier or miracle case rather than having been injured by the drugs, and the drugs being harmful. I’m sure a few of them are still waiting for my inevitable fall, as it was so kindly described before I began tapering, in order to welcome me back into the fold. The warnings seem to go in one ear and out the other. Rather than steeling my resolve to keep speaking out against these drugs, it just makes me so very sad.
“I’m afraid most of the people I am in close contact with worship at the alter of science and medicine…”
That’s exactly right kindredspirit. “Science” and “medicine” are branches of a false religion in which doctors and particularly psychiatrists are the false priests. Szasz has written a lot about this phenomenon:
This true and touching article brings back so many memories and shakes my Soul to the core. I have been there and did not think I would live. I never did drugs as a teenager in the 60’s and 70’s. I had no desire or need to. I always felt wonderful. My journey of Hell began with an unneeded total hysterectomy back in the 90’s. It was just a cyst, yet the Dr had me convinced that it was cancer and that everything should come out. My life changed in those 2 hours of surgery. I went on Estrogen, but not enough. My Dr was very ignorant when it came to HRT. I was finally put on an estrogen patch and sometime after I started getting very sick. I woke up one morning extremely weak, jittery, nauseated. I started losing weight rapidly and everything i ate went through me. I was in the ER 3 times. I did not realize it was the patch until I was admitted the 3rd ER visit to the hospital where I had the surgery. I was an RN there and had been for years. This was a well known university hospital. I was admitted under the medicine service as it was the weekend. The Dr knew nothing about anything. I finally realized that it was the patch and told him. He told me that I was having panic attacks. I was treated like a dog. I had not slept for months and had lost a lot of weight very rapidly. This was not panic. I took the patch off. In the meantime he called in Psych and they told me that I had separation anxiety from losing my uterus! How barbaric. I told them they were crazy. I was worked up the gastroenterology dept. and the Dr stated that it was definitely caused by something other than panic. It was the patch. Psych put me on Klonopin. I did not know anything about the drug as I worked mostly critical care where drugs were given IV. I was discharged with an apology and on the drug. I became depressed and felt very bizarre a few weeks later. I attributed it to the hormones. I was then on Premarin. I had no clue that this dreaded drug was doing this to me. My brain and GABA receptors were already altered. I had to go on Paxil for the depression and that helped somewhat. A year and a half later I decided to get off of the drugs. I tapered down on the Paxil and that was hell enough, but I got off. I tried so desperately to wean off of the klonopin, but had horrific symptoms. I had no idea it was withdrawal. I had no computer at the time and the Dr knew nothing.
I finally decided to go into detox thinking they could get me off and I would be fine. I went in and they cold turkeyed me. There were many people in there who were getting off of opiates and alcohol. I could not figure out why they were getting better and I was rapidly descending into hell. Even the staff were perplexed as I lost weight, could not walk right, hallucinated and the list goes on. I was finally discharged and went home with my husband and son. My husband worked and my son was in school, so I went to stay with my Mom who took care of me. I had to be fed as I had no coordination. I paced and rocked 24 hours a day. No sleep. My poor mother thought I was making this up, yet knew something was very wrong. I Prayed for God to take me and I contemplated suicide every minute. The physical symptoms were horrific. Dr Heather Ashton mentions them in her articles and I had almost everyone of them. I was able to go home for a weekend and managed get on the computer and found a benzo group. They saved my life. I made an appointment with a Psychiatrist and had to wait another 2 months. I was already 2 months out and getting worse. I finally saw him and he knew. He was appalled that I had been put on them in the first place and that I was cold turkey detoxed. In fact he got the name of the detox center and called them. I was immediately reinstated back on. It took months for me to stabilize. It took 2 years to even feel human. I did manage to taper some, but finally I stopped when it got to be rough. I stabilized and then did a slow water taper for a few months and it got rough again. I decided that I was going to live my life and not spend the rest of it in agony. I am on it but I do fine and this is my norm. I am now 63 and was 43 when I was put on it. I am angry because I am on a prescription drug created by big Pharma and am in bondage. There was a song in by Steppenwolf written in the 60’s about the drug pusher. I refer that song to the Dr’s who prescribe it and to Big Pharma. One day they will answer to God about their Greed and disregard for human life. God so understands this and why some of us could not handle the agony and just wanted to the pain to go away. They are in His loving arms. These drugs create dependence which so different from addiction. The public needs to know this. This has been so misunderstood and it seems like no one wants to acknowledge this suffering that goes on. I am not a mean Spirited person, but there are times I wish the Dr’s and all of the people at Big Pharma could take them and then cold turkey off and then sit in withdrawal for a few months or more. Then, they would get it.
I Pray for all of those who have and are suffering from the drugs and the withdrawal. God Bless you all and you, Angela for bringing this to the light!
Dana- I am so sorry for all you’ve been through. This is not fair for any of us!
Thank you Angela. It is not fair at all for anyone. You are a Godsend. I emailed to this to a friend who is now benzo free. We met on a benzo forum many years ago and are like sisters. She posted this to facebook and is getting the word out. She cried and started Praying for all of us. I am going to start a milk titration very SLOWLY which will take at least 2 years, but that is alright. You gave me the fortitude and courage to try again! The word will get out and people who have been afraid to talk about will beable to without fear of judgment and condemnation.
sorry to hear your story take care of yourself thinking of you you are a very brave woman
Thank you. You are a Blessing to your son! You are a brave soul along with your son and all of us who have and are going through this. No one could ever imagine this kind of hell. I feel grateful that I could post my story here. I have on the benzo forums, but hopefully the public will read our stories. I imagine most people know someone who is going through this and also there are people who have no idea that they are sick because of these drugs and the withdrawal. God Bless you and your son.
Excellent article, Angela! Thank you for bringing benzo awareness to the fore.
I feel sad, having been stuck in this for 40 months now. I’m still having terrible chemical anxiety. I have thought of death, yet I know I won’t do anything because I have a son to think of. I keep looking at the end of this, wanting so much to be there.
WHEN will doctors understand this? WHEN? I get nothing but stares. I’m sick and tired of it. Unfortunately, the chemical anxiety makes my blood pressure go frighteningly high, yet the pills don’t seem to do anything when I have this type of anxiety. It is pure agony.
THANK YOU for your work, Angela!!!
Thank you. We must keep going. There is no other way.
thanks Angela so sad to read this and wondering how you will be able to work with Doctors and psychologists who prescribe these drugs like they are sweets and cold turkey people off them and add new ones like it is a lottery.
It has taken almost 3 years to slow taper my son off various z drugs, antid’s, olanzapine, epilim the full cocktail i have seen the akathesia up close and personal, the days of brain zaps and unable to sit still for more than a minute before up again endless walking and the doctor just added in more drugs and threatened him with clozapine IM and said it was all psychosomatic and part of the “illness”..and that i should just let him get on with his job. u can see why these kind of people go in for torturing and interrogating jobs..
If I had let him my son would be dead because he said that would’ve been preferable to living with eternal restlessness.
You must keep up this good work and keep on caring for yourself and getting better every day so you can help other people but you must also be incredibly careful not to burn out and give too much of yourself
love and thoughts to youX
Thank you so much for your kind words. I do have to care for myself and avoid burnout for sure. We are a group of people who knows deep suffering and empathy both at the same time. It is a hard balance.
I am so glad your son has you as his advocate. Keep fighting for him. He needs you.
A very powerful story, Angie.
I am still suffering from the effects of benzos. I know the feeling of pure adrenaline, and it is scary as hell. I never knew anything remotely like it. I’ve gone to the ER about 7 or 8 times and been hospitalized 5 times. I even developed cancer, which I’m sure wouldn’t have happened had I not taken the benzos. But I had so much inflammation and adrenaline that my body was probably filled with inflammation. My bp was always sky high. After finishing Klonopin, I was in the ER one day and mentioned benzos. “Withdrawal lasts only a month,” the doctor so confidently said. HA!!!
It’s absolutely amazing to me that word about these terrible drugs is so slow and SO PAINFUL for the people affected. But I have seen the part I play in this. After that run-in with the doctor about withdrawal only lasting a month, I never told any of my doctors about benzos. And I’ve been to many, many doctors.
After over 5 years, this still isn’t over. I made many mistakes and have sensitized my CNS too many times. I’m learning, but it’s been a very slow process.
My hope is that VERY SOON the correct information will get out (because there’s a lot of talk of benzos now, but the accurate information is very hit and miss) and doctors will FINALLY be able to give correct information instead of giving people very dangerous, clueless info. Rehabs ought to be banned for benzo patients.
Thank you for this. I feel so, so sad that people have taken their lives because of benzos, but there are many others who have also, yet their loved ones don’t know why.